I would like to hear people's thoughts


#1
Sorry this is on two sites, ray said it was better here than in carers, I apologise for the duplication.


I would be interested in getting opinions from people who have had problems while on DA’s, I know noone can answer my question but other people’s experiences and opinions would be of help.

Some will remember me I was on here before, and thank you to all those who were so helpful to me. For those who don’t know me, I was seeing a 47 year old guy with parkinsons, I met him after diagnosis, we were together happily for 1.5 years they changed his medication and he lost plot. The highlights of which were he moved and wouldn’t give me his new address and supposedly went off with another woman but kept ringing me to tell me how much he loved me and missed me. On the occasions I got him to meet me he didn’t make any sense he was on a high and didn’t seem to know what he was doing, and he played golf 24 hours 7 days a week if he could, a usual conversation with him would consist of ’I love you and miss you so much, my new girlfriend is so much better at sex than you ever were, please keep in contact with me I love to hear from you, but only send one line texts as I can’t understand anything longer’ the hospital admitted to me that they thought he had a problem but they couldn’t change his drugs unless he asked them to, which he wouldn’t do because he said there was nothing wrong with him. I finally gave up as there was nothing more I could do.

I hadn’t seen him for 10 months, although he always kept in touch with me, but he asked me to meet him last week which I did (I had stopped meeting him as there was no point) They’ve changed his medication and he seems a lot better - not totally back to his old self, but there were moments when we were sitting chatting that it was like old times and it was nice. He said he still loves me and wants me back if I’ll have him, that I was always in his heart but he couldn’t do anything because his head was in such a muddle, he said he couldn’t cope and didn’t know what he was doing, that he knows he broke my heart, he said he knows he’s not back to normal yet but hopefully in time he will be, he said the other wman was to make me jealous and is his biggest regret and he's not a bad person.

My problem is I don’t know what to believe I don’t know what is real anymore - is this the new medication - or has he got bored annoying everyone else and decided to come back and annoy me - although I do think to myself that the one consistent thing through all this has been him telling me that he loved me - so maybe it’s true - or am I just picking out the bits I want to and deluding myself. He's a good looking man and can have anyone he wants so why would he come back to me after all this time unless he means it.

I suppose what I really want to know is - is it really possible that a man who treated me so badly could really have feelings for me, or am I just clutcing at straws. And if he does, is it really possible for him to get his head back to normal after everythings thats happened and for us to have a relationship. If he's not back to normal now (although alot more like his former self) is this the parkinsons and not the medication (I havn't looked up new mediction incase it's another da, but the former problem started when they upped the dose and he's on the smallest doze possible - which if this is another da could account for why he's not totally back to normal)

I would love to hear from anyone who has been on either side of this senario - and how it worked / or didn't work for them.

Thank you, Amy

#2
Hi Ray

I wasn't sure which place to put this as I wanted carers to respond as well, although I'm sure everyone reads both.

He seemed genuine enough, he showed me the medication he's on, I just can't remember it off hand although I'd be able to pick it out from a list, I just havn't looked for it yet. I can usually tell when he's lying to me, and he did actually tell me a few lies, pointless stupid things, although I didn't pick him up on them, which is why I think he's still on the da's but a much smaller dose. Obviously if we get back together again I will make it a stipulation that I am involved in his treatment - it was hard to watch him the way he was and not be able to do anything about it and I'm not going through that ever again.

I just really want to know if other people have had experience of this and whether it really did work out for them after. Can someone really say all those horrible things and really not mean them - but then I suppose people have said things when drunk that they didn't mean.

Thanks for your answer.

#3
Hi Amy, long time no hear!

Yes it's very possible that he can get back to his old self. I was on DAs for 7 years, but returned to complete normality within a week or so of coming off them.

The trouble is, unless you know EXACTLY what drugs he's taking now (reality, not what he TELLS you) you can't be sure whether what he's currently up to is genuine (I do hope so) or yet another devious plot.

Is there any way you can get to see his (new) regular repeat prescription, or talk to his consultant's secretary, etc, so you can get this checked out?

Ray.

#4
If there is anyone who would like to say something but not post - please mail me.

Thanks

#5
"GOLDENGIRL" has a lot of experience which might help, Amy. Why not give her a quick PM?

#6
Hi Ray

Sorry to be a pain, but do you have any idea where I can get a comprehensive list of drugs for parkinsons, I've looked on a few sites but it's not listed - it begins with an A something like Ascietic (probably nothing like that all),but longer. My fault I should have remembered it, but had odd letters in and I couldn't pronounce it- I always think at the time I'll remember but don't!!

Thanks

Amy

#7
Hi Ray

I've found it he's on Azilect 1mg per day, I remember it because its almost the same name as a knitting pattern I'm knitting lol. It's not a da from what I can work out, it's under MAO-B inhibitors - although I don't know what problems these cause, hopefully nothing like the requip!!

If anyone has been on this and knows anything about the side effects I would be interested in hearing about it.

Amy

#8
Hi Amy,

Azilect is not a Dopamine Agonist. It is most commonly prescribed either:

- as a monotherapy (ie sole drug) to treat the early stages of PD, particularly for younger people with Parkinson's

- or as cotherapy with another Parkinson's drug.

Azilect may have 'protective' qualities, i.e. taking it may slow down the progression of the condition. What it does do is it 'recycles' the dopamine already present in the brain.

I am currently taking Azilect (which is also known as rasagiline; Azilect is the brand name). I am 40, and have been taking it for less than a year. When it was prescribed - as monotherapy - I was told that it was unlikely to help for much longer than a year. My consultant also said that it was "almost a vitamin", by which I assume he meant that it might not do very much, but that it was unlikely to cause any adverse effects.

It is not known to cause any psychological problems.

However - and this is quite a big but - is this the only drug that your 'beau'(I use the term lightly and do not seek to cause offence) is taking? From what I know - and I am quite new at this, having been officially diagnosed for one year at present, although I do try to be as informed as possible - it seems unlikely that someone whose symptoms necessitated the use of DAs would be on Azilect alone. Another thing I was told about Azilect was that it "gives you back a year." I didn't understand this at first, but, having personal experience, I now know that this essentially means that it more or less winds your symptoms back to what they were, untreated, a year previously.

Please try to discover if he is taking anything else in addition to the Azilect.

It may be that he has been switched from one DA to another (I do not know how likely this is). It is possible that the second DA will not cause the same psychological problems at the first, but be aware that personality changes can occur at any stage of taking DAs.

I am peronally considering taking DAs as my next stage of medication and will have my husband on high alert while I try them. The statistics are disputed; some will tell you that the chances of encountering a DA-related personality problem are as high as 50% for younger patients. This is quite scary. Others say this is an exagerration. Whatever the truth, the fact is that my consultant was initially reluctant to put me on DAs because of my relative youth, but allowed himself to be persuaded that it was worth trying.

Zalamanda
http://bloggingwithparkinsons.wordpress.com

#9
Hi Zalamanda and thank you very much for your reply. He is only on this one drug I checked this as I thought they might have given him a cocktail.

I'd like to say that having set out on this myself without any prior knowledge of parkinsons and not knowing anything about types of medication, except what I have since learned through the internet and from hearing about people's personal experiences (which has helped grately), I am surprised that he needed the amount of drugs that he was on as his only outward sign of parkinsons is a slight tremor in his left arm now and again, and he doesn't have any of the other problems that I have read about on the forum. And I do wonder, hopefully wrongly, that as I am in Ireland and we pay full price for all our drugs, (no NHS) and he always said to me that the hospital said 'THIS WAS THE BEST DRUG AVAIABLE TO TREAT PARKINSONS' that they put him on drugs that he didn't necessarily need, either not understanding or not thinking of the long term, or because he was paying - but that's another story as they say. What you have said about the drug makes sense from what I have read about it - and thank you for explaining as you have.

As for da's Zalamanda I would not say anything against them, they are a very important treatment for young onset parkinsons and you have no reason not to take them. My problem wasn't with the drugs but that when he lost the plot (totally) and I went to the hospital for help they wouldn't help me as they said everything he was doing was because he wanted to do it and not as a result of the drugs!!! He had changed from one hospital to another and the nurse had met him ONCE and changed his drugs, and treated me like I didn't know what I was talking about. Anyone can have an adverse reaction to any medication, the problem is with DA's the adverse reaction can be major - we're not talking about a rash that itches - we're talking about loosing tens of thousand gambling (which he also did) and loosing everything he had worked his whole life for, and I would not like to see this happen to anyone else.

If someone asked me what I have learned and what I would do differently, and if it was me that had parkinsons, I would bring my other half to the hopital and say to the person who writes the prescription that if this person says I'm acting strange listen to them, it might not sound anything major and it might even be a stupid little thing, but if they say it believe them and do something about it, had I been able to do this there would have been no problem.

I do wish you well and hope you have better luck - and if you'd like to keep in touch and let me know how you get on I'd love to hear from you.

Thanks again.

#10
Dopamine Agonists:

Apokyn
Apomorphine
Bromocriptine
Cabaser
Cabergoline
Dostinex
Lysuride
Mirapex
Mirapex ER
Neupro
Parlodel
Pergolide
Piribedil
Pramopexole
Requip
Requip XL
Ropinirole
Rotigotine

Entacapone, one of the components of Stalevo, is NOT a dopamine agonist, but some patients have nevertheless reported compulsive behaviour (hypersexuality, gambling, etc) when taking it.

The patient notes for Entacapone DO warn about this risk, so if you are susceptible you need to talk to your PD nurse or consultant about finding an alternative solution which doesn't involve Stalevo or Entacapone - possibly Madopar.

Sometimes Entacapone is taken separately, alongside Sinemet Plus maybe, but the same warning applies.

#11
Hi Amy,

Maybe the best way forward is to do what you suggested.

(1) Ask what medication he is taking.
(2) Stipulate that you are to be involved in his medical supervision (inc. visits to specialists, doctors, nurses etc.)
(3) When at specialists, doctors, nurses say something like (if he says he is only on medication A) - "so he should only be on medication A"? If the answer to this is the same as the one he provided (in (1) ) then at least you know he is not misleading you.

Cheers,
Riccardo

#12
Hi Amy,

Glad to hear things have improved.

I came out the other side in a state of disbelief that I had behaved as I did, you remember it all.

It leads you to not trust yourself and expect not to be trusted. I stopped fishing, playing golf, I'd hand over bus/train tickets and receipts to show I had went somewhere. She attends all my appointments.

I have handed all banking/financial matters to my good lady, what was left of it.

I don't deserve my wife.

She doesn't bring up the past, I do enough of that.

We just fight the fight for, and with, each other. Some times I'll act the idiot and I'll catch the look that says "has he gone again!". It pains me, but I tone the idiocy down a tad and show I'm only kidding.

So, it hasn't gone, about once every couple of months now. It gets less and less as time goes by.

We are back to being the team we used to be.

So in essence, time heals and we are getting stronger and getting back
to supporting and loving each other as best we know how.

#13
When I said IT hasn't gone, I'm referring to me not trusting myself and not my losing the plot.

#14
hello amy, I tried this am to frame a reply to you. I did not know how. The last 2 post have done it for me.